NIVEL study: Recommended treatment of ME/CFS often detrimental

Press release circulated by Jan van Roijen on behalf of Guido den Broeder.  

I’d like to take this opportunity of thanking Jan for maintaining his international Help ME Circle mailing list, single handed, while struggling with his own ill health – Jan your diligence, commentaries and beautiful formatting are much appreciated, here in the UK – and to wish Jan and Guido a peaceful Christmas and better health in the coming year. 

 

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On 25 January 2005 “the Commission CFS” of the Health Council of The Netherlands presented its CFS report to the Dutch Minister of Health.

The report was fraudulent; they described ME/CFS as a psychiatric disorder, which could be cured by Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET).

In their long reference list they omitted all the 4-5 thousand bio-medical research papers.

““

Some quotes from members of the “Commission CFS” of the Medical Research Council of the Netherlands:

Dr. E Borst-Eilers – President:

“….ME patients can be cured with ‘graded exercise….”

Prof. Dr. Jos van der Meer – member:

“….I contradict the existence of a physical cause of Chronic Fatigue (Syndrome)….”

Prof. Dr. Gijs Bleijenberg – member:

“….Patients suffering from CFS often feel they do not have any control over their symptoms and…… that there must be something physically wrong with them….”

Prof. Dr JJ Heijnen – member:

“….I see no difference between ME/CFS and Burnout…..”

~jvr

“““““

From: Guido den Broeder

PRESS RELEASE Hilversum/Groningen/Zwolle, The Netherlands
17 December 2008

Recommended treatment of ME/CFS often detrimental

Frequently advised treatments for patients with chronic fatigue syndrome (ME/CFS) in The Netherlands appear to lead to deterioration of their condition as often, or even more often, as to improvement.

This applies to cognitive behavioural therapy (CBT) and exercise therapy.

Other treatments have far more positive results.

These are the findings of a study by NIVEL (Netherlands Institute for Health Research) among the ranks of the ME/CFS patient organizations. *

Most patients are dissatisfied with the way doctors diagnose CFS. They find their doctors have insufficient specific knowledge and feel they are not taken seriously enough.

The three Dutch ME/CFS patient organizations hold the view that the care for ME/CFS patients must be improved considerably. They emphasize that the development of the multidisciplinary guideline should continue without further delay.

Medical guideline

Since the beginning of 2007, CBO and the Trimbos Institute are working on a medical guideline for the diagnosis, treatment, examination and management of ME/CFS.

The patient organizations are looking forward to the completion of this guideline and believe that its drafting should thoroughly take into account the findings of the NIVEL study.

According to these organizations, the guideline should not serve to one-sidedly promote CBT and physical training; furthermore, the guideline should not be based upon one specific clinical picture. In addition to CBT and exercise therapy, anti-depressants often appear to make patients’ symptoms worse.

According to the survey, better outcomes are achieved with diets, guidance to find a balance between activity and rest, guided bedrest, and painkillers. The patient organizations plead for doctors to actively help patients to find the best possible treatment.

Serious consequences

The study further reveals that the consequences of ME/CFS can be very serious. Many patients are restricted regarding to work, school and household activities, raising children, social contacts and recreation. They indicate that they need more support – in such areas as income, work, school and daily life – than they actually receive.

Almost half of all patients disagree with the outcome of medical examinations, related to various social benefits, applications for transportation provisions and home adjustments. A large percentage finds that factors as prolonged recovery time, varying physical tolerance, concentration and memory problems, pain and dizziness, have not sufficiently been recognized.

* A.J.E. de Veer and A.L. Francke, Zorg voor ME/CVS-patiënten. Ervaringen van de achterban van patiëntenorganisaties met de gezondheidszorg. (Care for ME/CFS patients. Experiences of the supporters of patient organizations with health care.) NIVEL, Utrecht 2008. The research report (in Dutch) can be downloaded at
http://www.nivel.nl/pdf/Rapport-draagvlakmeting-CVS-ME-2008.pdf .

The three ME/CFS patient organizations in The Netherlands:

ME/CVS Stichting Nederland
Noordse Bosje 16
1211 BG Hilversum
me-cvs-stichting@zonnet.nl
www.me-cvs-stichting.nl

Steungroep ME en Arbeidsongeschiktheid
Bankastraat 42C
9715 CD Groningen
info@steungroep.nl
www.steungroep.nl

ME/CVS Vereniging
Kortenhorststraat 23
8015 BW  Zwolle
bestuur@me-cvsvereniging.nl
www.me-cvsvereniging.nl

END OF PRESS RELEASE

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